One thing I didn’t realize until I got cancer is how opaque the experience of cancer is from the outside. We live our lives assuming that what we see is all there is. So and so’s hair has grown back; they must have recovered. We believe we see the whole experience when, in reality, we only see a small fragment. My first-hand cancer experience taught me that the bulk of the suffering of cancer patients takes place below the line of observation. Outside observers only see a small part of our suffering, and mistakenly assume they see it all.
Why don’t cancer patients speak up? You may ask. Cancer patients in the trenches of treatment cannot always articulate their suffering. Most of them don’t have the energy. Some lack the skills. Other tried and gave up. (It’s hard to explain one’s suffering to someone who doesn’t see it). Inside the Mind of a Cancer Patient is a campaign I am starting to give voice to the million cancer patients suffering in silence. To make their suffering less opaque and more visible, so it can be addressed and alleviated. And to help cancer observers increase their awareness of the components of the cancer experience they are unable to see. For simplification, I define “cancer observer” as someone who is neither a cancer patient nor a cancer survivor.
This Concerns Us All
We are all concerned. Nowadays, cancer incidences are increasingly common. In the United States alone, a new cancer is diagnosed every 30 seconds. We all interact with cancer patients in one form or another. Some of us frequently: as medical providers, caregivers, family members, and close friends. Other casually: in workplaces, in stores, in public places, and on social media. Learning to realize the unseen suffering of cancer patients is vital. The alternative “judging suffering by the cover” leads to oversight, misunderstandings, and hurt.
Today cancer treatments are fiercely effective at destroying cancer cells. (A desirable outcome). At the same time, the processes used to administer these treatments frequently leave patients feeling dehumanized, distressed, and emotionally depleted. (An undesirable outcome). This extra layer of suffering aggravates the treatment experience and slows recovery. The majority of medical providers haven’t had cancer themselves; as such, they don’t recognize it, nor realize its impact. Cancer treatment is grueling in itself without adding any additional suffering. I strongly encourage oncology providers seeking to improve cancer outcomes to become curious about the unseen suffering they inadvertently interweave to the treatment experience. You may be interested in reading the research article I wrote for the SAGE Journal of Patient Experience: Leotin, S. (2019). An Insider View of the Cancer Radiation Experience Through the Eyes of a Cancer Patient.
Friends, Families, Citizens
Outside the hospital, social relationships are a source of support and comfort for cancer patients, but also of stress and hurt. It’s a common refrain in cancer support groups. In general, people mean well and want to be helpful. They just don’t’ know what to say. Or they say things that end up hurting the feelings of cancer patients without being conscious of it. It’s hard to imagine the patient perspective when one never had cancer, and, has a lifelong habit of judging suffering by the cover. (Most of us do). Other people find it easier to avoid cancer patients altogether. All cancer patients have experienced disappearing friendships as a result of their cancer diagnosis. (It’s painful).
For reflection, here are common remarks commonly heard by cancer patients in one variant or another. To cancer observers, they may look harmless. But for those going through cancer and hear them constantly, they often lead to hurt. Can you guess where the hidden thorn lies?
- “You are lucky you have breast cancer”.
- “So and so didn’t get chemo; they got off easy.”
- “You didn’t get a double mastectomy; it mustn’t be that bad.”
- “What doesn’t kill you makes you stronger.”
- “Everything happens for a reason.”
- “Sorry to learn you have cancer. My dad had cancer and died”.
- “This probably wouldn’t have happened if you did [insert any healthy activity].”
- “I know what you are going through; I broke my shoulder once and was miserable for a whole year”.
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